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Posted 5/31/2008 4:33 AM (GMT 0)
Well, well, well . . . now we aren't sure if my aches and pains are caused by Crohn's, UCTD or Sjogren's. After rheumy got results from the schirmer's test, he thinks that maybe Primary Sjogren's could be the little devil. He said this could account for most all of my symptoms. OR if I really do have Chron's (GI doc said MOST likely Crohn's but not absolutely), chron's could be causing the aches and pains. So. . . I remain on plaquenil and they are waiting for my next GI attack to start me on Entocort (a steroid released mainly in the gut). I can't take any NSAIDs anymore because the GI is worried that will add to my bowel issues. The rheumy says NSAIDs should not hurt the bowel, but it could hurt the stomach. . . but he wants to wait to prescribe something till we see what happens after next GI issue to see if the Entocort helps gut and connective tissue issues. Rheumy also read me the GI's notes (he he he he ) and said that she plans to do a pill cam when I have my next GI attack. Hopefully that does not include the nasty bowel prep which made me SO ill with the c-scope. I remain in pretty good shape as long as I don't overdo!! YEAH!! Blessings!
Posted 5/31/2008 1:03 PM (GMT 0)
Hi Rosie, I'm sorry you're having so many problems getting answers. I worry because I know your not taking anything for pain if you need it. I am just wondering if nsaids are ok for your bowels but it could hurt your stomach. What is she/he talking about sepositories? Or pain patches are what? So is endocort anything like predisone without the side effects? Boy I bet your really looking forward to that next attack aren't ya? (sarcasm). It sure would be nice if we could just get plugged in like the do with cars and come up with a diagnosis.

love ya

carol

Posted 6/1/2008 12:46 AM (GMT 0)
Rosie, I sure hope they figure things out soon! What a pain, not knowing exactly is the problem but at least they are keeping you on plaq. Now you know about all the GI probs I have and I take an NSAID (piroxicam) and I tolerate it well. When I had my last endoscopy it showed mild gastritis and my rheumy tried to change my nsaid but I didn't do well so she told me to take Prilocex or something similar to protect my stomach. Every now and then I feel my stomach "burning" and would take a prilocex but now I am trying to take them every other day.

Hang in there sis ((((hugs))))
Posted 6/1/2008 1:29 AM (GMT 0)
Hi Carol, I don't generally take pain meds (as in narcotics) because it doesn't treat the 'cause' of the pain. I have made exceptions when I absolutely have no choice but to function that day (a family funeral). But I really haven't needed anything like that for almost a year. My pain has been generally managed with the anti-inflams. The Entocort I would be taking is a pill. I would start with 9 mg per day which is similar to 45 mg pred. It is forumlated to release at the point where the small intestine meets the large intestine (cecul illeum) where my issues are. Because it doesn't release sooner, it doesn't work systemically (in the rest of the body) and therefore causes way fewer side affects and is thought to be safer than pred. Thanks for the encouragement! Stacie . . . YES! I'm noticing more and more that many lupans also have gut issues. I think my stomach is ok. Not sure about the small intestines. But I'll have to remember the piroxicam. I actually don't think I have a problem with the ibuprofen . . . but the GI is waiting to see if stopping the ibuprofen (9/day) will help the bowel inflammation. Sorry you are still having trouble with your tummy. Stinks. Blessings!
Posted 6/1/2008 2:41 AM (GMT 0)
Yeah my stomach has really never given me problems. My GI doc has always thought my problems were in my small intestines too and of course the only way to "look" at them is with the camera endoscopy. At the time of my problems the insurance co only covered it if the doc suspected internal bleeding, I am sure they aren't as strict with it now. Thankfully when my rheumy put me on Imuran a lot of my problems subsided, the main problems anyway. Since lupus attacks my gi tract I don't think I will ever be symptom free with my gut.

Take care sis and try not to worry over this. you are in my thoughts and prayers.
Posted 6/1/2008 3:47 AM (GMT 0)
Rosie.. as you know I been having problems with my gut also. I hope they find the answer soon for you. Over all I'm glad you are doing good. Good luck with everything. Debbie
Posted 6/1/2008 8:08 AM (GMT 0)
Good luck, let us know what the pill cam is like when it finally happens. I hope they figure out what is the primary cause so they can treat you more effectively.
Posted 6/1/2008 9:20 PM (GMT 0)
Stacie . . . It's great that the immurin has been such a help for you. I don't understand how they know what is lupus and what is crohn's etc. But, since I really don't have the positive blood markers . . . its still a bit of a mystery in my case. Thanks for sharing . . . it really helps to see other's experiences. Debbie and Redrose . . . Thanks for the encouragement. I feel very blessed to have attentive doctors who muddle through all this junk for me!! Blessings!
Posted 6/1/2008 11:53 PM (GMT 0)
Rosie, it stinks that it's so hard to tell what ailment is causing your symptoms since so many of them cause so many of the same symptoms. My old rheumy actually thought I might have primary sjogrens at one time, but never really followed up on it (that's one reason I quit seeing her). I hope the docs can sort it out for you. That's a bummer that you have to stop NSAIDs since they have always helped your pain so much. One reason I was nervous for my colonoscopy is that I was nervous they would find something and I just didn't want to deal with more health issues, so my heart really goes out to you. It seems like with these autoimmune diseases really take a toll over time. Hang in there and keep us updated about what you find out - it must be hard when you have two docs telling you different things. Take care. Lots of (((((Hugs))))))
Posted 6/2/2008 3:03 PM (GMT 0)
(((( Rosie ))))) I think my GI doc would be relieved to know I have a dx. I kept going back to him over and over because my first two rheumy's wouldn't even consider my gi problems a symptom of lupus or link it in any way. He knew something was wrong and so wanted to help me, he saw what kind of shape I was in. I think it was the second visit with my (3rd and ) current rheumy I was basically in tears over the gi problems, they were ruining my life and my life totally revolved around the toilet. We had talked about all the problems and tests that I had been thru since 2002 with no positive results (colonoscopy, gastric emptying scan, small bowel follow thru, etc). My rheumy has a couple of other patients like me so maybe that's why she suggested Imuran. Whatever the reason I am glad she up to date enough about lupus and was willing to take a chance. I could tell a difference in just one day. I had been dealing with morning diarrhea EVERY single day since 2002 and this was in 2005! I had lost more weight by this time, I was down to 118 lbs from 172 lbs now 40 lbs of that was during the time I was dx with celiac and the rest of the weight loss was after I went gluten free and when my lupus symptoms really started.

I guess since all my gi tests were negative my rheumy just took a leap of faith while making her decision and she said since I had such great results with Imuran that just reconfirms it with her.

Just keep hanging in there sis, they will get to the bottom of it. You are in my thoughts and prayers.
Posted 6/3/2008 1:28 AM (GMT 0)
Thanks Hippie . . . I do miss the NSAID's . . .but I'm not awful yet. I actually agree with the rheumy's approach on "let's see what happens w/o the NSAID's" But my GI issues have been very mild recently . . . hopefully, they'll stay that way. Stacie . . . that sounds like some of my problems. But mine come in waves that last from a few days to a few weeks. . . along with severe pain. Wow . . .you've had it bad . . that was a lot of weight loss. I'm glad the Imuran and gluten free have been such a great strategy. Thanks again for the encouragement!! Blessings!
Posted 6/3/2008 3:56 PM (GMT 0)
Rosie, have your doctors ever suggested Celiac? The symptoms include gut problems, fatigue, joint pain, etc. These are the symptoms of Celiac listed in the NIH site:

gas
recurring abdominal bloating and pain
chronic diarrhea
constipation
pale, foul-smelling, or fatty stool
weight loss/weight gain
fatigue
unexplained anemia (a low count of red blood cells causing fatigue)
bone or joint pain
osteoporosis, osteopenia
behavioral changes
tingling numbness in the legs (from nerve damage)
muscle cramps
seizures
missed menstrual periods (often because of excessive weight loss)
infertility, recurrent miscarriage
delayed growth
failure to thrive in infants
pale sores inside the mouth, called aphthous ulcers
tooth discoloration or loss of enamel
itchy skin rash called dermatitis herpetiformis

It goes on to say:

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.

www.digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
Posted 6/3/2008 11:32 PM (GMT 0)
Hey Patty, I have looked into Celiac before . . .but I'll give it another look. Thanks for all the great info . . . I'm going to look at your link right now. Thanks! Blessings!
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